AFTER a series of wrong diagnoses, and with steadily worsening health, little Zahra finally found out the truth. She had childhood MS – and there was no cure. Here Zahra and her mother Sabrina tell their heartbreaking story

Sabrina Rafiq, 32, a trainee teacher from Bolton, is married to Naeem, 37. They have a son Noumair, 13, and a daughter Zahra, seven. Sabrina says:

“When she was very little, Zahra used to be lively and independent. Every weekday morning she’d get herself ready for nursery school, where she loved going on the swings and thinking up wonderful stories.

On March 5, 2011, she was a bridesmaid at a family wedding. She looked beautiful walking down the aisle but afterwards she complained of a headache. Naeem and I put it down to tiredness but the next day she was very listless and the headache was worse.

Our GP thought she had tonsillitis and prescribed antibiotics but as the week went on Zahra kept losing her balance. She also slept constantly and had no appetite. We had more appointments but the doctors all said the same thing – tonsillitis.

Soon Zahra could barely walk, she wasn’t talking and she’d started wetting the bed. I found nappies for her from when she was a baby.

Little did I know she would never be toilet-trained again. When Zahra had stopped speaking altogether – and only waking to vomit – we took her to A&E. They said she was dehydrated and put her on a drip.

Feeling relieved the news wasn’t worse, I went home to be with Noumair while my husband stayed with Zahra. But a couple of hours later he phoned, distraught, saying the hospital suspected meningitis.

I dashed back but then we were told that further tests suggested Zahra had something called ADEM.

We had never heard of this, but it’s a condition where the spinal cord and brain swell up. It’s life threateningbut all I could say was, ‘Will she walk again?’ The thought of Zahra dying was unbearable.

Naeem and I were told that ADEM tends to happen as a single attack. Children are more prone to it than adults but if they survive the first attack, they should make a full recovery. As Zahra lay there, silent,a single tear trickled from her eye. I just sobbed.

Zahra was given steroids to reduce the swelling and after three days, they seemed to be working. Within three weeks, Zahra was regaining her speech and she could take a few steps, although she needed a wheelchair and help with feeding and washing. But all I cared about was that she was alive.

Zahra was discharged and we took her home. At first she did better than doctors expected, bravely trying to walk in the house. But then she stopped again. I heard her singing Twinkle Twinkle Little Star with my mum but she was slurring the words. I panicked and took her straight back to hospital, thinking she was having an ADEM relapse.

The doctors said Zahra had been through a lot and that recovery takes time but my mother’s instinct disagreed – I knew something was very wrong.

Then Zahra was sick. She was rushed off for an MRI scan, which revealed she had water on the brain. My worst fears had come true – she was having an ADEM relapse. Our poor child needed brain surgery to drain the fluid. Zahra was in hospital for 11 weeks.

Four-year-old Zahra in 2010 smiling for a holiday snap in the days before her illness [S MAG]

From my time in hospital I have learned a lot about medicine. When I grow up I’d like to be a nurse to help make people better

Zahra

When she finally came home, Zahra was a changed girl. She was frustrated and angry with needing help like a baby. Once she even said: ‘I wish I’d died.’ It was heartbreaking.

I told her, ‘You are the strongest, bravest girl. I’m so proud of you.’ Zahra didn’t want to be around people now – so different from the bubbly girl she used to be – and going to school was out of the question.

Naeem and I felt so tense, fearing another relapse. Then in early 2012, Zahra started having fits and doctors began to suspect that she didn’t have ADEM at all – it was childhood MS. That would account for the relapses and recent brain scan results showing that the myelin, the protective coating around the nerves, was damaged.

That June, childhood MS was confirmed. I didn’t feel angry about the misdiagnosis; Zahra’s doctors have been wonderful and childhood MS is very rare and hard to diagnose.

But it was a bitter blow. MS meant Zahra was never going to get better and that hit all of us very hard.

Living with MS is a battle. On many days Naeem and I have cried. I often feel like a carer first, mum second, but it’s so unpredictable. One day Zahra may be able to wash, the next day she can’t. She hates being in nappies and also the stares she gets when she’s out in her wheelchair. It’s hard for her to see children running around, like she used to.

Her emotions have changed, too. She now needs a lot of time to process how she feels and prepare herself for new events. In 2013 we went to Florida with a charity which enables sick children to go on holiday, as medical staff go, too. Before we left I did a treasure hunt with clues that we were going away. But when we got there it was wonderful to see her in the theme parks, giggling like a normal child.

One of the hardest times for me was when Zahra left mainstream education to start at a special needs school. It felt like MS was winning – but all the pupils have disabilities, which has helped her become more sociable again.

Zahra’s illness put my relationship with Naeem under strain but we came through and now we’re 100 per cent stronger – a real team. We do worry about the future if anything happened to us. We haven’t been able to make plans yet – if we get half an hour to watch TV together, it’s a date night for us.

Zahra is getting older, too, with more challenges to come, but her achievements help me through – if she does a sum or enjoys a story.

For Naeem, it’s practical highs, for example, if Zahra washes all the soap from her face. I would love her to walk further and become continent, but you just can’t tell with MS. When she was born I wished she would do well, get married and have children – be happy. I still want those things for her though I joke she will have to marry a doctor. She’s a clever girl and I’d be thrilled if she could go to university.If she can’t have health, I ask for her happiness. She deserves it.”

Zahra says:

“It was really hard to be told I have MS at first. I feel upset when people stare at me in my wheelchair. If they are a child, Mummy says I should say, ‘Hi,’ to see if they come over to ask why my legs don’t work well. I’d like to but I feel shy.

I don’t like wearing nappies and not being able to do things I used to when I was younger, such as going on the playground rides. This makes me angry. But I have to get over it and keep going.

It would be nice to know another child with MS. They would know how it feels. I would say to them be brave. I have it too. I try not to think about MS. It’s scary. I want to think about nice things.

Mummy and Daddy help me a lot. I love my family. From my time in hospital I have learned a lot about medicine. When I grow up I’d like to be a nurse to help make people better.”

MS: the facts

Multiple sclerosis is a neurological condition where the coating around nerve fibres (myelin) is damaged, disrupting messages to the nervous system. It is so rare in children that there are no statistics about the number of cases.

Symptoms of childhood MS are problems with memory, thinking, co-ordination, balance or vision. Tremors may also occur.

For more information about multiple sclerosis, see www.mssociety.org.uk or call the free helpline on 0808 800 8000.